This is the Truth Network. Today's episode is part two in a three-part series. To hear part one of how the Lord sustained Jill Aguiar in the loss of her father, please listen to last week's episode. To hear the culmination of this three-part series, join us next week and hear Noelle's testimony on what life is like, having been a microcreamie and now seeing the goodness of the Lord at 14 years old. Welcome to Hope in the Morning.
turning tragedies and tears into testimonies of hope. often described as a roller coaster. Life in the neonatal intensive care unit is filled with exhilarating highs and heart-stopping lows. Who can you turn to when the child that you love so dearly hangs in the balance between life and death moment by moment? Our guests today know that roller coaster all too well.
They lived life in the NICU with their daughter Noel, who was born weighing only 12 ounces. Joining us today are Tom and Jill Aguiar. Thank you for joining me today, you guys. Bye. Happy to be here.
So can you just share with me a little bit about kind of the beginning of your journey?
So when you found out that you were pregnant with Noelle, what did that look like? Which was your first baby, right? We had lost one previously to her, but yes, she was our first pregnancy that seemed to be going normally. And everything seemed to be on track until we got to about 18 and a half weeks. That was our first ultrasound.
hadn't done anything before that except normal check-ups and heartbeat checks. Everything had seemed fine. We got to that first ultrasound and, um the ultrasound tech cut it short and left the room. We didn't pick up immediately that something was wrong until she handed us some pictures and quickly ushered us out and said we needed to meet with the doctor. And still, like, I thought something might a little bit might be up, but I wasn't thinking.
anything serious. And uh we got taken to the doctor's office and she just said There are a lot of things really wrong with your baby. And basically they needed to schedule another ultrasound in a couple of weeks to that was more in depth. They were they could not see on their machine what they needed to check.
Okay.
So even in that first ultrasound that you got this news, did you find that that was difficult to trust the Lord with that? Like were you were you struggling at all with like Everything is possibly about to change in what you envisioned for your future. I Well, my dad had been uh an LBGYN. My mom was an ultrasound specialist. I had lived growing up in the medical world in that specific area of OBGYN.
And so I knew. I had in the back of my mind, I knew a lot of things could go wrong. Um, I knew that Also, it's really easy for them to say that something's wrong when things aren't necessarily wrong.
So we were definitely nervous and scared. I think our first thought was, well, maybe the baby has Down syndrome, although Some of the indicators they had mentioned didn't seem that, but that was all I was familiar with, and what I had a little bit of experience with with children.
So But we weren't thinking anything incredibly serious at the time. Yeah.
So, yeah, we were nervous. Um and certainly you're You're crushed to a point in that moment, but I also had a lot of hope just coming through. the medical system and So at what point did you have another scan and realize that things really were as serious as they initially thought? It took, I think, a couple of weeks for them to get us in with the specialist. And um that's when they Went through a really detailed ultrasound.
It was a much higher level machine. And they met with us at the grief not a grief counselor, but uh Oh, is she uh um genetics counselor.
Okay.
And they basically said they didn't have the testing to prove anything at that time, but they found even more things wrong.
So the few things that they had seen in the other appointment were like exponentially multiplied in that next appointment. And they really thought she had a condition called triploidy. which means that the baby has another set of chromosomes, usually that comes from something that happened with a twin. That went wrong.
So they thought she had absorbed part of a twin or like something had happened where it sh the egg should have split and it should have been twins. They really thought that that's what had happened. And it's a condition that's incompatible with life.
So that that appointment was really devastating because that's where they basically told us your baby is not going to live.
So did you kind of, did both of you guys, did you travel through the rest of your pregnancy really thinking that This was the only time that you had with your baby was while she was in utero. For the next several weeks it was like that. We had, um, we finally reached a point where she survived longer than they expected. And we kept coming to the next appointment, and they kept saying, well, these things are still wrong, but they were seeing some improvement in certain things. Or, what had looked bad previously, they were able to get a better picture of, and it wasn't what they had seen before.
Okay.
But still, the picture looked really bad. She was extremely small. There were things wrong with the placenta, there were things wrong with the cord.
So, even if she was improving, they really didn't think that she was going to be able to make it far enough. Because, just the cord issue alone, when babies have that cord issue, a lot of them are born, stillborn, even if they make it to term.
Okay.
So. Everything was still stacked against us. But we finally reached a point, they said, Okay, she's made it this far. if she happens to be born living We will have to intervene with life-saving measures if we don't know what she has because That's just the medical protocol. And we were at a position that if that was the case, We of course we wanted the if she had that chance of life, we wanted them to give that to her.
But if she was going to pass away, we wanted that to be peaceful for her and for us. And I did not like both of us, we were just like we couldn't bear the thought of them You know, just the medical team being around her and just putting her through so much more pain. Just to give her a few moments of life, if that's not what was going to happen, we just want to be able to hold her. And so that really. The only way to prevent that was to get an amniocentesis.
That changed everything because everything came back normal. And they were shocked. I mean, we were surprised too, in one aspect. On the other hand, we weren't because we knew God was capable of anything and we knew He was working something out. They still said, We still think you're on the same path.
She's too small. We still think that outside of a miracle, she's still going to pass away. At that time, the blood flow in the cord was only pulsing with her heartbeat, which is the first step to then the blood flow will reverse from the baby, and they only have a short time to live once that blood flow reverses from them, because that's their lifeline. Yeah.
So they. they see that step first when the blood flow stops being continuous and it's only pulsing at that time, they know that that's the first step toward. Death. At what point in your pregnancy did they start seeing that it was only pulsing with her heartbeat? I think that was uh maybe twenty five, twenty six weeks.
Okay.
Yes.
Now Tom, I wanted to ask you as the father, I feel like When we have situations like this, when women are pregnant and they know that there's going to be complications or possibly a fatality with the baby. People are pretty good about coming around the mom and surrounding the mom. What was that like for you? Did you have people surrounding you? What was it like for you being the leader of your family and having to not only navigate that grief yourself, but also walk your wife through that?
That's a good question. I had a lot of friends at church that I could talk to, and friends at work knew about it, but it was comforting to know that the Christian walk that we had established growing up, I grew up in a Christian home, so I knew that God was sovereign and that it was ultimately in His will, and I didn't have to stress or worry about what was going to happen next. And I think there was that apprehension of Not knowing if she would make the pregnancy, but ultimately our prayer was that she would. Um If it was God's will that she would survive, that you know, you have to open your hand and trust God that He will. Provide life, and there's nothing that you can do in and of yourself through that.
Yeah, yeah. Did you find that the miscarriage that you had faced before kind of gave you guys a new perspective of kind of holding on to hope but with open hands. The miscarriage that we'd had before that was um I hadn't handled that like a typical miscarriage. I think it happened just in a couple months beforehand. And they, you know, it was our first.
um, time with dealing with all that stuff and when I had talked to the doctor's office, they had told me, oh, it was just a chemical pregnancy. You know, like it wasn't you weren't really pregnant and it wasn't until after, you know, a couple of years later as I was going through other losses that I realized that that wasn't the case. As I really dug into it. But at the time, you know, we were upset, you know, but we were just like, Trying to take in what they were telling us, and they're like, you know, it's the first time you were pregnant, but it wasn't real. Your body's just getting used to, you know.
whatever and so We were like, okay, trying to trust that and take take that in, and then we were pregnant the next month with Noelle, and that seemed to be going fine.
So I didn't really and neither of us really processed that, I think, in the same way because everything happened so quickly and the information that we were given Um Yeah, it yeah. If it's later that we really ended up taking that in and You really can really realize that we were pregnant, and that was a loss. Yeah, you know, I mean, as believers, I think that that's something that doesn't get. Talked about maybe as much as it should is that you know, in the medical world, they want to call it a chemical pregnancy, and that's just that's the medical jargon for it. But it's pregnancy, it's the conception.
A life has been created, a unique human life in the image of God has been created, and even that life is worthy of celebration and worthy of grieving. And, you know, I know at this point you said you were about 26 weeks that you found out that the amniocentesis came back and it was clear, but they still had a lot of concerns for her. I remember it was, I remember it was October, so maybe it was like 24 weeks or something, somewhere in there. And you were due in February, correct? Early February, is that right?
The end of February.
Okay, okay.
So you guys were having regular scannings at this point, I would assume. Is that correct?
So I was at the doctor every week. I had two doctors, one that was following me, just making sure that my health was fine, and then the next week I would see the specialist that was basically following her.
Okay.
And so I was getting scanned every other week.
Okay.
And they were just basically Were they at that point, were they kind of waiting, telling you that She would likely not have a heartbeat one day when you came in.
Okay.
So you were living almost in a state of anticipatory grief, just waiting, knowing that you didn't know how long you would have her. Was that something that the di was the church able to come alongside you as well and minister to you and kind of encourage you maybe on some of those harder days? Yes, I mean we had we had you, we had another good friend, Sue, was constant she was checking on me daily. um our pastor and his wife Pam and Carrie, they called us regularly. I mean not I mean texted and, you know, checked on us at church too, but literally picked up the phone and called us often.
Um and we were over at their house at least once or twice, even just asking questions like, Okay, How do we plan a funeral for a baby? How do we. look ahead, like this is our first baby. We don't have other siblings that we would would remember her. They're not going to have any experience having walked through any of this with us.
Yeah.
But we want them to know that she lived and she was. Our first our first baby, you know, we talked through all of that kind of stuff with them. Our church family, the other elders and elders' wives were really good. And just the church family, you know, it was smaller then. Yeah.
And everybody knew about it and it just was really close-knit. And people, it was never taboo to talk about. People asked us all the time. It was a very open discussion. People would cry with me.
They'd come up and ask me about it and just. you know, sometimes I was cried out, you know. I had so many tears through the week I couldn't cry as I was talking about it again. But they would start crying. And, you know, that weep with those that weep, it just they were grieving It felt like the body was grieving with us as we were walking through it.
Well, when we come back, we're going to talk about. what delivery actually looked like for you and just kind of how the Lord brought this full circle, you know, and what it looked like to have hope. even as you were preparing to mourn. Are you in a season of seemingly endless sorrow? Is your heart longing for encouragement?
Join us on Hope in the Morning to hear powerful testimonies of how God is a light even in our darkest valley. We'd also love to pray for you. Simply submit your prayer request at hopeinthemorning.org. Have you ever struggled to comfort a grieving friend? John 11:35 says, Jesus wept.
When Jesus was told by Mary and Martha that their brother Lazarus had died, Jesus wept. Today on Hope in the Morning, we invite you to learn what it looks like to weep with those who weep. Learn what it means to sit in the ashes and be encouraged that even in our morning, there's hope. His name is Jesus. Visit hopeinthemorning.org to learn more.
So continuing on with your journey here, you're at this point you're in your, are you in your third trimester? Are you still in your second trimester? Let's see, I have to remember. But third. Yes, I'm in my third trimester.
It just started. The beginning of your third trimester, and you're being checked routinely. And what did your journey look like from that point? We finally reached a point, I think it was Maybe that's what the 26, 27 week mark was, where they basically said She looks healthy enough. That if she makes it to a certain size, she could be born living.
Now They were very careful to preface that with a lot of buts and that they still did not think that that would happen. Um but they said. They gave us a glimmer of hope. That they thought that she could survive considering she didn't have triploidy and they didn't have any other. Chromosomal thing or any other issue that was pointing to think something that could kill her other than her size at that point.
What was that weight goal that they were giving you that this is what we will what you have to reach, what she has to reach in order for us to even try to save her? Uh, five hundred grams. They said that the how many ounces is that?
So we I think that's right around a pound, maybe 11 ounces, I think.
Okay, no, 'cause she was born at twelve and a half, so a pound is sixteen. And she was 356 grams. I used to know all this in the NICU, all the conversions. But it's closer to a pound.
So, what did that look like? You said when she was delivered.
So, what did that look like? What did your journey look like for her to be delivered? What was that day like? I woke up and knew that something wasn't quite right and called the hospital because that's what they had instructed us to do. And they said, well, if she doesn't move in the next hour, then come on in.
I knew at that point she was very, uh, very predictable on when she moved during the day. She wasn't getting a lot of energy or anything to so she was very predictable. I knew that she was not going to move in the night. She never moved in the night.
So we just said, well, we better get up and get ready and go. We got to the hospital within the hour, got to the elevator doors and she kicked. Which was a huge relief. I knew she was alive. Yeah.
at that point. But I looked at Tom, I was like, well now what do we do? Because we had a full work workup appointment that afternoon and he was like, we're here, let's just go up and get it checked. and it took a few hours. Um they didn't thi nothing seemed urgent at the moment.
They did a one of the quick scans at bedside and Couldn't see anything in particular that was overly wrong. And so, but they were like, We're going to go and admit you. There's enough concerns that we feel like we shouldn't let you go home.
Okay.
And they went ahead and got a shot in for like her lungs. Um. and that kind of thing. But and that was about uh a couple of hours later they sent us for a fully Um detailed scan. And that took, she took about 45 minutes to do that.
And they took us to a room. Goddess settled in and she said, You can't get out of this bed for any reason. No reason at all. You have to be on monitors 24/7, so if you need something, you have to call. You can't move.
and she turned to walk out, And it's All of a sudden it was like people were coming out of the walls. Wow. It was unbelievable. People were addressing him. People were like shoving medicine at me.
People they were like putting stuff on our heads. It was crazy. And the doctor the specialist suit we'd seen that morning came running in and he said, We have to get her out now if there's any chance of saving her because the blood flow has completely reversed. She had basically minutes to live. What was that moment like for you?
Like all of a sudden your wife. You know, your wife, you went in for a routine check, really, based on your guys' scheduling with the baby, and now it's like life or death. We have to take her now. She was, you know, as you said, she was under that 500 grams. And so, were you guys, were you worried for not only your daughter, but for your wife as well?
Oh, yeah. I was apprehensive, and I was worried. But the doctors communicated so well and I didn't feel like she was lacking of care. They knew exactly what to do, and they communicated ahead of time what what would transpire.
So, there wasn't any question in my mind that they couldn't handle it. It was just a wonder of. Am I going to lose Our daughter, yeah, you know, is my wife going to be okay? And they couldn't answer that, but they would reassure me that they're capable, and they had she was. Fifteen doctors right there.
Wow. So they took you back for a C-section, I'm assuming, right?
Okay.
Yeah, we were racing down the hall. How long was it from the time they took you back to the time that Noelle was delivered? How quickly did they deliver her? I don't even know, but it was minutes.
Okay.
It was very fast. And they got her out and They told us, don't expect anything. They said she has not been getting what she needs for so long because of the accord. And so just she'll probably be listless. She they basically prepared us to see a baby that looked dead.
Obviously not hear any little cry. No, no, nothing. They said she'll we don't expect anything. And because she was under that mark, they really didn't think the breathing tube would fit because the smallest breathing tube is made to fit a five hundred gram baby.
Okay.
So, and she was, you know, 150 grams under that.
So, they really prepared us to they said they would do their best, but they also wouldn't prolong it and that we would. Be prepared to just, they would hand her to us, and we could have those moments if that's what it came to.
So they delivered her. And Miracle upon miracles. What did you guys hear? She's a little bit of a single. it sounded like if you ever heard a kitten, like that's what it sounded like, but you could tell it was mad.
That little cry was so mad. She was not pleased that they had moved her from her comfortable little spot. And she came out like trying to, I mean obviously a baby that size cannot even have the reflux to really hit at anything, but she was moving, she was trying to get at anybody, even as they put the tube down. Or we're trying to get it down. She was trying to push at them.
She was fighting from the moment they saw her. Which is exactly what you want for a baby in an ICU, right? It is. And honestly, even just that alone is what, because we didn't find out for weeks after that that the medical team was conflicted, even in that moment, on what to do. And 'cause the breathing it they had tried like the ne the nurse practitioner, the respiratory therapist had tried to get the tube down.
couple of times and it wasn't going down. Finally, the neonatologist himself stepped in, and the Lord guided his hands to get it down. But there was confliction in that with the team.
Some of them felt that we'd been done a disservice, that she should have just been handed to us. Because they thought she was not going to live long anyway, and so what's the point of as we went through the next month, especially, and watched the roller coaster and watched her suffer, they really were like. I they've struggled with that, that we Okay. that that had happened. Like some of them wondered like should they have just been given that moment to have Did you guys at any point wonder?
In those early days, when you saw her really struggling in the NICU, was that. Was that a a weight on your own heart ever? Not in the moment of delivery, but certainly as the days continued and she went through some really, really challenging times with especially with the pulmonary hypertension. I remember Carrie coming up. And uh I remember I was just standing there with tears in my eyes and he said, Jill, he said, someday she's gonna thank you and I just said, I don't know I said, I don't know if we should be doing this.
It just felt cruel. Yeah.
Um and we've seen other families lose their babies after putting them through.
some really heartbreaking procedures hoping that would help.
So it really weighed heavily on us. I struggled. I could not pray for her life. I. I left that to others to pray, and I just am so thankful for those verses in scripture that talk about how the Spirit interprets our prayers.
Because I could only cry out, basically, with groanings that could not be uttered. Yeah.
Knowing that I wanted her life, but I didn't want to beg for it so much that God gave me only what I wanted to the detriment, like against his will. And I didn't want that.
So, did you feel like your prayers were almost more in the form of tears in those days? Like, the Lord just he sees your heart, and he knows that. You love this precious baby, but you love her enough that you want what's best for her. Um how long were you guys in it in the NICE with her? Uh that stretch was one hundred and eight days.
Wow, before she came home. When she came home, how much did she weigh when she came home? Three and a half pounds. Three and a half pounds. Yeah.
So tiny. And You know, you guys are dear friends of mine, and so I've known you guys for many years. And I remember, you know, everything having to be so sterile for her. And I would, you know, change my clothes. I'd take a shower and change my clothes and come over so I could hold her and just watch me give her a bath and feed her her little bottles.
And you guys really have just been the sweetest parents to her. How is Noelle doing today? How old is she today? And how is she doing today? She's 13.
Okay.
Health-wise, she's doing good. Quite well. She's come through a lot. Her lungs are healthy. Um She still has her sets of challenges where we've been in and out of therapy her whole life.
Um she's still tiny. Yeah.
You know, she's the size of about a eight year old. Um, but she's still a firecracker. And loves people, loves life, and is On her own track, you know, she'll always have challenges, always be. you know, somewhat delayed, but overall she's doing really well and um Yeah, she's a joy.
So when you guys look at her, do you just look at her and see the mercy of God really? Yes, for sure. Yeah.
Well, I so appreciate you guys coming on. I wanted to talk to you about the fact that. Your story, you guys were gracious in writing your story to go in the book, Hope in the Morning, and your full story is in here. You know, it's so incredible to think how the Lord Takes your story now and took your guys' faith that you had, and you didn't know what the outcome is. You know, that's what faith is.
We have to take something that seems like it could be hopeless, and we have to place it in the hands of the Lord, and we have to know that He loves you. And just like how you guys chose to do things for Noelle that were hard to watch, that were hard to watch her suffer through. That's how the Lord is for us. You know, He loves us so much that He... He sees these things that we have to suffer through, and he doesn't delight in our suffering, but he knows the outcome.
He knows that these are things that are going to refine us and make us more like Christ. Um you know, I can attest as friends of you guys that you guys are people that Point others to the Lord continuously. And I think that that would be much more of a challenge had the Lord not walked you through the fire. You know, I forget where I heard it, but I heard where people, You know, they walk through the fire. Not to talk about the flames that they suffered, but to come back out with buckets of water for those that are getting ready to enter.
And, you know, I feel like those are the friends that you guys are, you know, and I've just seen that time and time again. And I just so appreciate you guys sharing your story. And if you want to hear the rest of their story, you can purchase. Hope in the Morning and at hope in the morning.org, and you can read the rest of your story. Thank you for joining me, guys.
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